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Sunday, December 23, 2012

LB caught another stomach bug. He had a couple messy
diapers for both us and the sitter on Tuesday, but he was happy and
eating just fine (26 ounces of formula, plus three meals of solid food
and a nice bedtime snack). As I was rocking him back to sleep very
early on Wednesday morning, he had a diaper blowout that required both
of us to change our clothes, so we kept him home on Wednesday to keep an
eye on him. Once again, he was his usual happy self and eating just
fine (28.5 ounces of formula, plus three meals of solid food and a nice
bedtime snack).

Thursday morning, he had three messy
diapers before breakfast so he once again stayed home with me. Although
he was still happy and eating just fine, he was getting a little bit
upset about the nasty diaper rash he was developing. I was getting a bit
concerned about the volume of diarrhea he was having because it was to
the point that I could barely throw the diaper outside in the trash and
get my hands washed before we were changing another one. By the
afternoon, I called his specialists at the metabolic clinic to see what
we should do. The last time this happened, he had messy diapers, but he was also not eating. He was eating just fine this time, so I wasn't quite sure what to do.

After
hearing our saga, the doctor immediately said that LB was
too young to be losing that much fluid. She wanted him to have lab work
done immediately to check his levels and the only place we could go at
that time of day (5 p.m.) was to the emergency room. She asked where we
were going so she could call ahead and warn them that we were coming. I
packed the diaper bag with lots of formula, wipes, bottles and our
special can of polycose (sugar solution) and our prescription of
carnitine that has been waiting in our cupboard for use when little
brother is sick and headed for the ER.

When we arrived,
they were waiting for us and we were ushered back into a room quickly.
The pediatrician who saw us had already talked to the metabolic
specialist and had ordered his needed labs and IV fluids. She said she
was surprised that LB looked so good. She had expected him
to be lethargic and dehydrated, but here he was laughing at her,
drooling and trying his darndest to wiggle out of my arms so that he
could explore our new surroundings. Things seemed to be going well,
although she warned us that we likely wouldn't be going home right away
since the metabolic doctor had advised her that we should be admitted
for observation and fluids.

Things started to get worse
when they came to start his IV. It was a team of two nurses. One
nurse tried the inside of his left elbow with no luck. The other one
tried the inside of the right elbow, again with no luck. Then, the
first nurse said she would go get another nurse. The third nurse I
recognized as the one who was able to get his IV in on the first try the
last time we were in the ER, so I felt confident that this would be
accomplished quickly. I was wrong. She tried his left elbow and his
left hand with no luck either. We were up to five pokes and there was a
bag of IV fluid that he needed sitting right there on the counter. I
was beyond frustrated that they couldn't find a single vein.

A
little time passed and Husband arrived to be my emotional support since our older son was now asleep with the neighbor watching him. They called
down two nurses from the floor, one from the PICU and one from the
NICU. They tried to get veins in his ankles on each foot without
success either. We were told that babies this age were hard in the
first place because of the layer of baby fat they have. LB was extra hard because he was dehydrated and that made it even more
difficult to find a vein. We were now at seven pokes. Still no IV.

Fortunately,
he was still drinking just fine, so the pediatrician in the ER called
the metabolic physician and asked if we could attempt to have him
maintain on his own orally. She agreed and gave us instructions for
mixing his polycose and carnitine with pedialyte. He needed to drink a
minimum of 2 ounces every hour and that he did. Once the 8 tablespoons
of polycose was added to four ounces of pedialyte, we had 5 ounces of
liquid that he happily downed every time a bottle of it was presented to
him. I'm sure it was like drinking a pixie stick. I was worried that
he would never drink formula again by comparison. We were admitted to
the pediatric unit shortly after midnight and I spent the night sleeping
on the hospital couch with LB and waking every 2 hours to
feed him his sugar solution.

By the morning, his
diarrhea still had not subsided and his labs looked bad. Really bad.
The physician on the floor said that even if she didn't know he had
MCADD, his labs indicated that he needed IV fluids. He was losing more
fluid than he was taking in and at the rate of loss (3 diaper explosions
per hour at a minimum), there was no way he could make up that ground
just by drinking. Even an adult couldn't do it. They needed to get an
IV in. So, they called in some more nurses from the PICU, each of whom
poked him once and neither of them got the IV in either. We were up to
nine pokes now and I was practically hysterical. I couldn't stand to
see anyone else dig around under his skin for vein while he wailed in
pain. I knew he needed the IV. I knew they were just trying to help
him, but it was still so hard to watch. I hated seeing him hurting.

The
doctor said it was time to start thinking about plan b -- possibly a
central line or possibly a pic line -- because he needed those fluids
badly and the longer we waited, the worse it was going to get. Now, I
was really scared. It was hard enough to watch the IV attempts. Now,
they were talking about sedating him and taking him to the OR? And the
scariest part was that no one was telling me reassuring things like
"he'll be ok" or "he's still doing fine." The conversations with the
nurses and the doctors all said one thing -- "he needs IV fluids fast"
-- yet no one seemed to be able to help him.

At this
point, LB was exhausted and had fallen asleep in my arms.
The doctor said to let him rest for a bit. They would try one more time
for a peripheral vein with their very best person and that they would
do everything they could to stack the deck in his favor (warming his
hands and feet with warming pads, taking him to the procedure room on
the floor where the light was best, looking at all the options for veins
before taking the very best option). If it didn't work this time, we
were going to get serious and head to the OR.

The
entire time LB was napping in my arms, I was praying. I was
sobbing and I was praying. I called/texted/facebooked everyone could
think of and asked them to pray for LB. I needed some divine intervention in the form of someone who could get an IV in him. I didn't want to see him go through a procedure like a central
line. I needed to see that bag of IV fluids that had traveled with us
from the ER to the floor doing him some good. I needed to know that he
was going to be ok.

Shortly after noon, his nurse came
in and said it was time. I took a deep breath and carried him down the
hall to the procedure room where we met Heidi, the nurse from the NICU
who was our last hope. She looked closely at all the options she had to
place the IV before deciding on his left foot. I laid him down on the
table and held him securely while singing a song softly into his ear. I
couldn't watch again. He cried and I sang to him. After a while, I
heard Heidi ask if she should draw the labs, too. I looked up and asked
if the IV was in. Heidi smiled and said she had gotten it on the first
try. I was so happy that I started weeping. He was finally going to
be ok. He was finally going to get the fluids that he needed. Our
prayers had been answered.

We
returned to our room and set about letting the IV fluids work their
magic. They wanted at least 12 hours of fluids, so we would need to
spend another night in the hospital. They also wanted to give his
intestines a break, so they switched him to a special lactose-free
formula. They said I could feed him as often as he was hungry, but only
2 ounces at a time and to try and space the feedings at least 30
minutes apart so we weren't overwhelming his system with large
quantities of liquid that would inevitably just go right through him.

It
was hard to keep him happy with only 2 ounces at a time,
especially because I was also preventing him from practically all
physical activity to protect that IV site from any damage. I had a
stir-crazy baby who hadn't been allowed to crawl, cruise or walk since
Thursday afternoon or inspect the contraption wrapped around his left
foot, despite the fact that he was being fed pure sugar for 24 hours
before being switched to intravenous sugar that afternoon. Let me just
say, it was an interesting stretch of time. Thankfully, Husband brought us a
nice assortment of books and toys and the floor had a highchair that
they had brought to our room. It ended up being a rotation of me
singing songs to him while holding/bouncing him around the room,
followed by a stretch of sitting in my lap reading books, followed by
sitting in the highchair playing with toys, followed by a bottle and
sometimes a nap. We did whatever kept him happy and prevented him from
pulling at his IV and it worked.

By Saturday morning,
his diarrhea had subsided and his labs were looking much better. His
sugar numbers were normal. His acid numbers were normal. His salt
numbers were high though so they disconnected the IV since he was
probably getting too much salt through the combination of IV and liquid
intake by mouth. We were told that they would repeat the labs that
evening and probably send us home if he continued to feed well,
continued to have normal stools and had good lab results at the end of
the day. We counted the minutes until the labs were drawn and were
ecstatic when the results came back normal. We were going home! Three
days before Christmas, we were headed home!

That night,
as Husband and I tucked our boys, safe and warm, into their very own beds,
under our roof, we were profoundly grateful. While LB and I
were in the hospital, our older son was home with Husband suffering from a
similar stomach bug. In all, the last few days in our lives were not
pretty -- hospitals, a crying baby getting poked for IVs and blood work,
dirty diapers, vomit, you name it -- but even if we only ate toast on
Christmas and even if no one in the house felt well enough to change out
of their pajamas, it was going to be just fine because we were going to
all be home together. I didn't need anything else for Christmas, just
the ability to be home with my boys. My Christmas wish had already come
true.

Thursday, December 13, 2012

I am very excited to announce that I have been selected to serve on a national task force on newborn screening! I applied at the end of October and found out last week that I was picked. I get to spend the next year learning more about newborn screening and developing a project to expand information and awareness about the newborn screening system. Most importantly, I get to travel to Washington, DC in May to talk to the Secretary of Health and Human Services Advisory Panel on Heritable Disorders in Newborns and Children to advocate for the infant screening system. What an honor! I hope that my participation helps other families in our situation.

Friday, December 7, 2012

Climbing
is his new favorite pasttime. He climbs entire flights of stairs with
ease. He has moved on to improvising stairs out of common household
objects. For example, he used the toybox as a stepladder to get himself
onto the coffee table. He used the Christmas decoration boxes as a
stepladder to get his hands up onto the kitchen counter. If it even
remotely resembles stairs, he will climb them.

He
figured out how to clap on command. When you say "hooray!", he claps
with gusto in response. He also sometimes claps for Daddy when he does
football signals for him. Touchdown and illegal procedure are
especially worthy of applause (and laughing).

He really
enjoys chasing his big brother around, or if this brother isn't
around, he also likes to torment the dog. She continues to be a great sport as he sits
and jingles the tags on her collar or uses her collar as a way to pull
himself to standing.

He's still very much into things
that roll -- balls, cars, etc. We can spend quite a long time racing
cars across the kitchen floor and rolling balls down the treadmill
while LB laughs and laughs.

We've moved
onto eating a lot of finger foods. He likes noodles and all types of
canned fruits, plus steamed veggies, Saturday morning oatmeal pancakes
and, of course, Cheerios and Puffs. He gets three meals a day of solids
now, plus a bedtime snack and around 24 ounces of formula.

Sleeping
might be getting a little better. We re-discovered that he has a
white-noise toy and the sound of falling rain as we lay him down in his
crib seems to help him settle into comfortable slumber. He realizes
that he's been tricked into sleeping in his own bed a few hours later,
but at least I'm getting to lay down in my own bed for a few hours a
night now (up from about 15 minutes per night, so that's definitely
progress).

We saw the pediatrician today and here are his stats:

Height - 29 inches (75th percentile)

Weight - 18 lbs, 7 oz (30th percentile)

Head - 17.25 inches (17th percentile)

We opened up the 12 month clothing bin (his big brother's
hand-me-downs) and it was all shorts and t-shirts, so it looks like he's
going to luck out and get himself a new wardrobe again in this size.
One day, I'll open the hand-me-down bin and actually find things
that are in season!!

Oh, and we went and got him his first pair of shoes. Size 3.5 Wide. Isn't he snazzy?

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About Our MCADD Journey

We didn't know much about newborn screening and we knew even less about metabolic disorders until our youngest son, "LB", was diagnosed with MCADD when he was three days old. We have a wonderful pediatrician and incredible metabolic specialists at the Colorado Children's Hospital who have educated us about his condition and taught us how to keep him safe. Keeping track of LB's food intake has become a natural part of our daily routine, but he is otherwise a completely normal and happy kid.

I started this blog to reassure other Moms (and Dads and Grandparents, Aunts, Uncles, Cousins, Friends, Neighbors, etc.) that MCADD isn't as scary as it may seem at first and to provide some insight into this condition as we learn more about it over the course of our son's life.

About Me

Nauseatingly optimistic and way too busy for my own good, I am hopelessly addicted to good books, soft blankets and warm cups of cocoa. I blog to tell my own story and keep up with the stories of my pals who are spread out across the world doing wonderful things. I am happily married to the man of my dreams and we have TWO handsome little boys along with a houseful of pets who provide endless hours of entertainment.

I have a Bachelor's degree in Communications and a Master's degree in Public Policy. Professionally, I am an alternative fuels strategist/junkie/advocate, but newborn screening advocacy is a personal 24/7 mission because I'll never be able to fully express my gratitude for how newborn screening saved my baby's life.